Wednesday, April 22, 2009

"The length of a life does not reflect the depth of the love shared between a parent and a child. From day one children give and receive love with grace. Their hearts are open to the possibilities and free of doubt and fear."--Houston Hospice

I found these beautiful words on a website today as I was doing some research for our family. Oh the change in my daily routine! Who would've ever thought a couple of years ago when we were doing this...

and this...

and this...

and this...

and this...

that today I would find myself on the Houston Hospice website reading about their Butterfly program and all the services they have for children and families dealing with the life of a child with a terminal illness and the care they provide during for the child and family as well as afterward? Is life not the craziest thing?

When I didn't want to read about finished reading about the Butterfly program, I thought I would do some blogging...check out ours and my favorites for a little while. One of the families I've met in the blogging world also deals with the ugliness of Batten Disease with their little girl. Her daddy's entry today was lovely.

One of the gifts we received recently came in this gift bag.

It reminds me of Emma. One day she'll be free from all the pain, frustration and confusion of Batten Disease. Until then, I'm so glad we have family and friends who are loving us through each step of the way...


  1. That little girl on the bag does remind me of Emma. What a beatiful child she is and what a beatiful butterfly she is going to be. I just love all the picutes you shared. The one of the kiddos walking hand in hand on the beach is lovely. Love y'all so much and thank you for sharing Emma with me. I love the momnets I can spend with her, thanks for allowing me to be apart of your jounrey.


  2. Thanks for referencing Andy's post today, Christy. I liked it, too, but then I guess I'm kind of partial :) It's interesting that your Hospice program uses the word butterfly... it's so sad not to be able to help our girls spread their wings.
    It was a treat to look at photos of Emma from earlier! She's a beautiful little girl.


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